Crohn's or Not??

Hi everyone... this is my first post. I appreciate all replies / guidance.

My 13 yr old son has been in pain for 7 weeks. Lower right side of belly button. Our first GI doctor said it was either appendicitis or Crohns. Fearing the worse, we changed doctors and went to one of the top Pediatric GI centers in the US. We were lucky to get an appointment with a very well known and highly regarded doctor.... we felt very comfortable with her right from the start. She ran our son thru the usually tests including stool test for bacteria and inflammatory enzymes. He has also had.. CT scan with contrast... MRI with contrast.... endoscopy and colonoscopy. What was discovered was: 1) inflamed lymph nodes in small intestine (lymphadenitis) and 2) retrosternal mesenteric hernia. That's all. Biopsies were normal..

The GI doctor has all but ruled out crohns. However, she doesn't know what's causing his pain and she has not seen inside the small intestines. So she sent us to a surgeon who will: 1)inspect the small intestine from the outside, 2) fix the hernia and 3) he wants to remove my son's appendix for no reason. I'm against this move.... however, the GI doctor supports removing it. Why if it is not infected or inflamed?

My son's surgery is scheduled for Monday. I need help with:

1) has anyone been diagnosed with Crohn's without inflammation and with a normal endoscopy and colonoscopy?

2) should I allow the doctor to remove my son's appendix for no good reason at all?

THANK YOU for reading my post.... THANK YOU for your replies.

I'm going to leave this post in the General IBD section for now in the hopes that more people see it, but I may move it later to Undiagnosed Club since there will be more people struggling with similar issues there who can hopefully give you advice.

Pain in the lower right is often indicative of pain in the terminal ileum, so it's good that you're getting the small intestine checked out.

Thank you Ocean.

I think it is Crohn's as no one can figure out the cause of his pain.... swollen lymph nodes and mouth sores.

It's amazing how quickly our Pediatric GI doctor .. gave up.

That's frustrating, I'm sorry to hear that. There's a lot of people on this forum who are struggling to find a diagnosis as well. I hope that you get an answer so your son can get treated soon.

Mouth sores are also another indicator of Crohn's, since it affects the whole GI tract. I used to get them a lot when I was in flare, as well as swollen lymph nodes, actually.

Ocean: can I ask which test or observation led to your diagnosis. I realize there's no simple test. However, many folks whom I've spoken to were diagnosed by colonoscopy -- very visable.

For me it was a combination of stool samples, colonoscopy and biopsy. At the time I was originally diagnosed with Ulcerative Pancolitis, and then last year my diagnosis was changed to Crohn's because I developed a fistula, which is a complication common to Crohn's.

I also have Crohn's in my family, so my father and his father had it. So it was pretty clear between medical history, tests and active symptoms at the time what I had.

Also, I should have done this sooner, but here is our section for people who are undiagnosed, as well as a thread for parents with undiagnosed kids. I've posted in the thread to try and redirect some parents to you, but feel free to browse, as well.

We also have a very active section for parents of kids with IBD.

The odd thing with my son is there's no "inflammation". However, the lymph nodes in the ileum are raised. The doctors said that's common in children and not to worry. He was very constipated and had to go on laxatives for 5 days ... he is finally normal. But was definitely blocked up.

My son has been in pain for 7 weeks..... no one can figure out what's going on.

How long to 'flares' last? Could he be going thru a flare?

Is he off the laxatives now? How are his BMs since?

Flares vary from individual to individual, and it depends on that as well as the severity of their illness and their treatment.

Hi and welcome.
I'm so sorry to hear about his pain.

I'm going to start of with paging DustyKat . I know her dd was dx after surgery.

YES, it is possible to have only small bowel Crohn's.

I think your right to push for the whole answer.

Hugs, we have a wonderful parents section on the forum. Your more then welcome to stop by.:hug:
http://www.crohnsforum.com/forumdisplay.php?f=49

Please keep us updated.

Welcome Joey123123,
My son is 14 and was diagnosed when he was 10 through colonscopy/endoscopy, biopsies and inflammatory markers in his blood work.
How has his weight, growth been?
Another test to consider would be a pill cam, would basically take pictures along the intestinal track so would include insides of small intestine.
There have been other kids who ended up being diagnosed with Crohn's even when scopes were clean.
A lot of the kids don't seem to follow the "rules" when it comes to symptoms diagnosis. My own son for example other then original blood labs are always in the normal range even when we know inflammation is present as shown in MRE (MRI Enterography) and fecal calprotectin tests. He has also been virtually symptom free other then lack of growth, and no appetite.
I hope you can get some solid answers whatever may be causing his pain, please let us know how everything goes. I'm going to tag some of the other parents to chime in my little penguin, farmwife, mehita.

how was your child diagnosed? I can't believe a high profile Ped GI doctor from a nationally ranked hospital cant make this diagnosis? In fact, she's "almost" completely ruled out crohns. BUT... the first doc we saw said it's either crohns or appendicitis.

So sorry to hear of what you and your son are going through.

Has he had a fecal calprotectin test? It can't diagnose crohns or IBD but is sensitive to inflammation in the GI tract. Also, an MRE(magnetic resonance ethnography) could provide imaging of the small bowel as well as a pill cam to see the inside of the small bowel. Has your son had any tests that look into GI motility?

Other than GI symptoms are there any other symptoms that have presented themselves beyond the mouth ulcers?

A flare can vary in length some can go a year or longer with symptoms if not properly medicated. Since flares can be cyclical in nature then symptoms may subside and then start up again.

Yes.. the fecal calprotectin results were NEGATIVE. Our second GI was very focused on this. In fact, she relied heavily on this test along w/ endo / colonscopy results. My boy sleeps with his hand on his stomach. When he sneezes... he grimaces and cries. This is awful

Thx Jacqui... He can eat.

Have they investigated for other illnesses such as:

[Yersinia enterocolitica. This is the most common cause of mesenteric lymphadenitis in children. This bacterium can cause gastroenteritis and other problems. Itmay "look like" other conditions. Two examples are Crohn's disease and acute appendicitis.

Click to expand...

I would still push for a pill cam but you may want to widen your search to other specialists in the case that your boy is dealing with something other than IBD. Could you possibly talk to the GI about getting a team approach to your son's care at the children's hospital. It may be that one of the other specialties could pick up in something.

Also there is a possibility that the surgeon will be able to tell you more after doing the surgery on his hernia, sort of an exploratory type situation. There have been kids who have been dx'ed when the docs went in to take out what they thought was a bad appendix only to find appendix was normal but areas of bowel were inflamed.

Funny you mention that......... they want to repair his hernia (retrosternal / behind seventh rib) and remove his appendix (which is fine). I really don't want them to remove his appendix. No reason to.

Hi Joey and :welcome:

I am so very sorry to hear about your lad and what he is going through. :ghug:

I would continue to push on with answers and not rule out Crohn’s just yet for the following reasons:

1. The lymph system is quite extensive in the bowel and one area where there an abundance of nodes is around the appendix. It is true that it is not uncommon for children to have swollen lymph in this area but it can also be indicative of inflammatory response in that area.

2. Unfortunately with Crohn’s the extra intestinal manifestations, like mouth ulcers, often appear weeks/months and even years before the intestinal symptoms show up. Aside from mouth ulcers does he have other symptoms…headaches, joint pain, back pain, rashes, eye problems, growth/weight issues.

3. The terminal ileum is the most common site for Crohn’s, either on it’s own or on conjunction with the large bowel.

The appendix: It may be that they are thinking of a grumbling appendix and so whilst in there remove it to rule it out as a future cause of problems should things not settle. Would I want my child to have it removed if normal? I think that very much depends on where you are at with things and I will explain what I mean by that…

My daughter was undiagnosed for 18 months. Her symptoms did not match Crohn’s so it was never on the radar hence the lengthy delay in a diagnosis and the lack of appropriate diagnostic procedures (scopes). As time went on the period of time between symptomatic relapses became increasingly less until finally they were constant and it was at this point they became increasingly severe. No one had any idea where things were headed so going in was the only choice. She had had an abdominal CT scan the week before and everything appeared normal, another reason why more invasive tests weren’t done at the time. The scheduled procedure was laparotomy and appendectomy. I agreed for them to remove the appendix because to be honest I was at my wits end by then and just wanted her pain and suffering to end. As it was she was a mess in there and the surgeon knew immediately she had Crohn’s disease and she ended up with a resection.
As a side note, this is how my husband’s cousin was diagnosed too. They had been treating her for Rheumatoid Arthritis for 4 years as joint pain was the overriding issue for her but then the abdo pain started up. They ended up doing a laparotomy on her and again the surgeon immediately identified it as Crohn’s. She didn’t have fistulising disease so a resection wasn’t necessary, he just closed her back up again.
My children and the cousin all have terminal ileum disease.

What bloods has he had done? Are there any abnormalities?

Has any imaging been done?

Dusty. xxx

I see that imaging has been done.

Dusty.. Thank you so much for sharing your experiences with me. My son has asthma.. so does my daughter... so does my mother. Not me.

Labs: blood tests all normal..... stool test (including fecal calprotectin) normal. MRI with contrast.. normal.....CT Scan normal...x-rays (many) showed constipation. He was on laxatives for 5 days... stool was coming out like pebbles. Endo and colonoscopy with biopsies were done. Normal.

My GI doctor who specializes in IBD is giving up. I feel it. Hence, she's referred us to a surgeon to repair a .. retrosternal mesenteric hernia. The surgeon will look at small intestine inch by inch to see what's going on. He wants to remove my boy's appendix. I ask why if there's nothing wrong with it.

Why they haven't prescribed something to reduce his pain / swelling ... I don't know.

Monday will be a big day for us.

thanks again!

Joey

It will be up to you if his appendix is removed and you could say to the surgeon that if in his trained eye it is grossly normal then do not resect it. It can be a difficult at times to tell though if lymphoedema is present around it.
Just bear in mind that all the imaging in the world can’t replace a surgeons eye so what appears normal on a scan may not be so when seen in real life. :ghug:

I am not sure about the analgesics but if what is required is something stronger than what can be obtained over the counter then those sort of drugs can often slow the bowel down (constipate). Since constipation has been an issue perhaps they want a clearer picture of what is going on before prescribing.

As you are in a grey area at present I would start keeping a diary of things. They can be useful at pulling the pieces of the puzzle together and are much better than relying on memory alone when you are in stressful situations like consultations and ER visits. We have one in the wiki that has suggested areas you may want to start documenting…

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck for Monday!

Dusty. xxx

I believe there is parent on here who child had a normal appendix removed and symptoms improved greatly for that child.

If my memory services me correctly that child does not have a dx of Crohn's but their brother has?

Paging Sascot. I think it was her dd that had the appendix removed?

Yep that would be Sascot.
As far as normal or top doc a lot of docs are very good but some only like kids who fit in boxes.
My kiddo does not fit a box at all.
He had normal upper Gi series with small bowel follow through - could even visualize TI region at all - radiologist stated the one thing they knew he didn't have was crohn's since the TI didn't light up .
Bloodwork was normal
Fecal cal while really sick after dx was normal .
Ct scan only mild thickening in ti which was described away.
Scope looked perfectly normal as well .
Only the microscopic changes and the very well needs non caesating granulomas found in the small bowel - large intestines got the crohn's box checked.
Mre is different than a MRI with contrast - you need an mre to get a good look .
One kiddo only showed Ibd on the pill cam .
That said you need a Gi who is willing to listen and keep digging to get answers.
DS has seen multiple GI since including top Ibd specialists .
The two Gi who did not specialize in Ibd were the best since they listened and looked at DS and his history not what typical for an Ibd kid .

Hope the surgery goes well.

Yes, my daughter had her appendix removed as a last resort after years of severe pain in her "bottom". They did a laparoscopy and found nothing but removed the appendix just in case. Thankfully they did as she has been great ever since. The docs still do not believe it was the appendix that caused the symptoms, they found only mild inflammation, but she has had no problems since so I am happy! She is checked for Crohns now and then (faecal calprotectin), but thankfully no sign. I have also recently had my appendix out after months of on and off pain. GP didn't think it would be the appendix, but the surgeon took it out, also just in case. I haven't had pain since. My appendix was at reached to the tubes around it, which may have caused some of the pain
I would say it might be worth getting the appendix out, if he is going through an operation anyway, at least you can rule it out.

My son had his (perfectly healthy) appendix removed when he had his small bowel resection. The thought was that if he ever complained of stomach pain again, we could immediately rule out appendicitis, BUT the difference between our kiddos is that we have a definitive Crohn's dx. There is a good and reasonable chance that my son will end up in the ER someday with stomach pain.

If I were in your shoes, I think I'd let the surgeon know my concerns and ask him to explain the pros and cons, but if during surgery he strongly feels it needs to come out, I would default to his expertise.

Thank you all for sharing your thoughts, stories and concern. Tomorrow we'll get a closer look at my boy's intestines as he's having his retrosternal omentem hernia repaired. If the doc thinks the appendix should come or doesn't look right... I'll let him.

Question: How long do flares last? What makes them go away?

I am knot sure about the rest but I would say leave the appendix alone. Hope you get some good answers soon.:thumbup:

2

Thx. RonRoush. Thanks my STRONG view. But... if doc comes out during procedure and say.. I think we should remove cause there's inflammation or near the pain area.. I may loose the argument with my wife and doc. We'll see.

Thank you for sharing your thoughts and concern. Have a great day.

joey123123 said:

Question: How long do flares last? What makes them go away?

Click to expand...

It really varies by individual. It could be weeks to months depending how quickly you seek treatment and how well that treatment works.

For us what has made them go away in the past was prednisone. It usually kicked in within a day or two. After five rounds of pred though within two years, I had to put a stop to that and my son switched to Remicade. He's been great ever since.

For some kids, switching to a liquid diet or doing EN or EEN works.

I'm not very familiar with hernias. Could it be possible that is where the pain is coming from?

So sorry you are in undiagnosed land. I also have a younger daughter with chronic pain, unexplained vomiting etc and can not even het a GI to look at her even though she has an older sister with Crohns.

IBD is just one of many many GI issues that can present with your son's symptoms. I can not believe a specialist is only looking at Crohns or appendicitis...what about everything else? What about diseases, conditions from other parts of the body that present with abdo pain....does the doc have any suggestions as to other specialists.

WEll bright side is you haven't yet gotten our favorite "IBS" dx:/

When will docs agree that it just isn't normal for kids to be in constant pain?

Mehita:

Funny... my kid often would go on prednisone for asthma / croup. Wonder if it held Crohns intact? We are all at a loss.. we are all nervous wrecks........I don't expect any discoveries tomorrow. Just more of the same.........

Thanks for your thoughts / response.

Let's hope it's the hernia.

Thinking of you guys today and hope surgery goes well and provides some answers.

I hope the surgery goes well and that you get some firm answers!

joey123123 said:

Funny... my kid often would go on prednisone for asthma / croup. Wonder if it held Crohns intact?.

Click to expand...

How often has he been on pred? I guess that's a possibility... controlling both the asthma and Crohn's. Did you notice gastro symptoms were better during and after pred?

Also keep in kind any pred up to 7 or 8 weeks before could make the colonscopy clean and there still be an issue. DS had an allergic reaction which required high dose pred a few weeks later had a clean upper scope.
This was prior to dx .
It really muddied the waters since the Gi didn't know he had been on pred and I didn't know to mention it .

My boy is in the OR. Doc came out and said he has NO hernia....... said his omentum is attached to abdominal wall. Has anyone ever heard of this? He took appendix out...even though it looked normal. Help ...thoughts? Anyone ever hear of this?

Not finding much other then can occur after laproscopic surgery for hernia. I'll keep looking. Hope you get more answers in the meantime. Sending HUGS

It is a fat containing "fold" that drapes over your intestines
It’s difficult to explain but everybody has a lining that encases most of your abdominal organs (called the peritoneum). This lining has folds in it and within these folds there is fat, blood vessels and nerves. There are actually two omentums (or folds). The one Oprah is referring to is called the greater omentum - it is attached to the front of your stomach and part of your colon. Like everyone, if you gain weight you will deposit more fat in places around your body, the omentum is no exception. If you lose weight, the fat within this fold or omentum will decrease. Interestingly, the omentum serve a purpose - it’s referred to as "natures band-aid" and will help limit the spread of infection or bleeding inside the body, it can also help prevent perforations from things like appendicitis spreading throughout your body

Click to expand...

Not much help

I'm only finding what Jmrogers already posted. A fatty fold that hangs over the intestines to protect it. If it's attached to the abdominal wall, that might explain the pain... I can only imagine how that might hurt.

Keep us posted!

Paging QueenGothel :hug:
I think her daughter had issues with this.
She has a lot going on with her daughter, so I don't know when she'll stop by.

I think what the doctor is talking about is abdominal adhesions.

I have been told there are three main causes:

1. Previous surgery

2. Infection (possible caused by appendicitis)

3. You can be born with them.

https://www.mdguidelines.com/abdominal-adhesions

I had surgery 20 years ago for adhesions of unknown origin, my doctor best guess was appendicitis at sometime.

In my case the ovary was attached to the fallopian tube.

Adhesions is my best guess too. I think they can be quite common, especially if there was previous surgery, like Catherine mentioned.

Wow I am super late! farmwife send me a private message when paging as the forum does not notify me. Been super busy with the preparation of garage sale for Take steps walk.

My kid had an omentum issue occur... It became such an issue she ended up having an omentumectomy. It cause blockages in 3 places in her small the surgeon actually described it that it looked like a giant spider on top of intestines. This occured where she had not had a previous surgery. Granted in my opinion in what they told you, it should be attached to the abdominal wall. It being the apron between the wall and intestines. Now if it were attached to the intestines this would be more of what we had going on.

I will not scare you with our giant story. Regarding the info I have read in the post ai will give you my opinion. FYI: I know surgeons like they are family. Pretty sad but it is my reality. I would have totally approved an appentectomy on a good appendix, it really is just a stupid part of the intestines that is not used and is a useless part of the organ, and it can just cause pain, it is such a routine tiny thing I wouldn't fret over it.

Constipation can be a real pain in the butt! Pun intended. My best advice would be to control that without miralax or any other laxative. Our Silver Bullet is All-Bran pulverized in a processor then thrown in a salt shaker, a tiny amount sprinkled on foods, start small as it works really well. (We sprinkle it on a PB sandwich) It is very possible that his issue is severe constipation. Constipation can cause the intestines to distend due to back up and can cause inflammation as the small twists and turns trying to fix itself. Also like previously discussed can even cause adhesions. Being in Dx purgatory sucks trust me I know! My kid is there and at this point ignorance is bliss, when she is well. Then when the crazy stuff starts we look, test, poke and prode and end up back in purgatory. Meanwhile what we do is follow the anti-inflammatory protocol. We keep her moving by using white grape juice all day. Skip all dairy as it constipates with the exception of Organic Yogurt. Add a high fish oil, tumeric force, culturelle probiotic, Florastor probiotic when on Abx. Following a non-processed whole food diet. Other than that I would look into his diet and stop any bad habits. ie: Cheeses, Milk, Fried foods, Caffeine, Soda, Junk food. I know it sounds stressful but you must think of food as medicine now. An occasional Dessert is fine but choose wisely like Strawberry shortcake, Dark Chocolates. Once things are moving along, you can allow other foods back in. I blame the majority of my kids issues on Constipation poorly controlled using Miralax. It is hard to get the water requirements in using laxatives.

Sorry I took so long! I do rely on email to notify me of any changes. My kid doesnt really fit in this forum usually. She is in purgatory so far that we do not fit into any specific category anymore. You found yourself a great group of parents though and support. This forum was there for me when my world fell apart. :ghug: hugs to you and yours. I also run a few FB groups for kid whom have had major surgeries so I am there often admining.

Sorry for not replying sooner... I've been visting GI doctors in New York City and Boston. My son had the pill camera endoscopy... basically swallowed a pill sized camera which took 50,000 pictures as it traveled through his GI tract. The one thing this procedure showed that was not seen in endoscopy or colonoscopy were very very small and very few ulcers in the small bowel. The GI doctor ("Super Doctor") did not think the ulcers were consistent with Crohn's (but what is consistent with Crohns?). My son's lymph nodes are still enlarged in his ileum. The doctor prescribed Entocort.. he's taking 9 mgs per day and is experiencing all the side effects. Hunger, muscle pain, increased appetite.. you name it. Worst of all ... his pain is still there. Same place .. we're now entering month 5 without any diagnosis. I shared my son's pill cam results w/ the first GI doctor who said the pain was in my son's head. She now states... Oh, it might be Crohns. Great.

Has anyone ever seen very very small ulcers in small bowels? Does Crohn's present (hide) like this or is usually all out full blown?

Any thoughts on the Prometheus Test to diagnose Crohns? Their lab is in San Diego. Has anyone tried their services?

We have had the Prometheus diagnostic done. I don't think you can diagnosis from it but is just another piece of the puzzle and more information. They look at sereolgy and specific gene mutations that have been shown to coincide with Crohn's or UC. It's an expensive test and most have had trouble with their insurance covering the cost.

Thx. I will hold off for now and to see how Entocort works.

There are a few parents with kids on here whose kids were diagnosed by pillcam but I can't remember who. Hopefully, they'll chime in soon.

My daughter did very well on Entocort, but there are some kids who need prednisone (but that has even more side effects).

Have you seen a rheumatologist by any chance? Some immune disorders can cause GI symptoms.
I'm going to tag DanceMom - if I remember correctly her daughter also had similar test results and was finally diagnosed with an immune disorder.

^^^ yeah that ...
Sometimes rheumos see the bigger picture not just the GI tract.
They deal in a lot of gray areas.
JSpA can cause subclincal inflammation in the Gi tract as well .
DS has this but falls under the Ibd associated side .

Here is a link

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2686900/

http://www.minnesotamedicine.com/Pa...9/September-2009/Clinical-Akin-September-2009

LOL I wasn't even thinking of JSpA (and both my daughters have it!) but that's very true. I've met several moms of kids who have "non-specific" inflammation in their GI tracts and a spondyloarthropathy. If you're going to Boston Children's they are supposed to have a GREAT rheumatology department.
If you are in NY we have been to the pediatric rheumatology department at the Hospital for Special Surgery (in NYC).

Thank you all.... I havent even thought about visiting a rheumie... I will look into this tomorrow. Thx.

Last question..... the pill cam showed very small ulcers ...very small and very few.... in small bowels. Do crohns ulcers start small and get bigger / deeper? Do they go away on their own or do they get worse? Can the ulcers be biospied?

I think a Rheumo is a great place to start. Ours works very closely with our GI and that has been beneficial in my daughter's care. She definitely has many IBD symptoms and Crohn's seemed like the most logical diagnosis. We went with that for awhile, but the IBD medications weren't relieving all of her symptoms and we knew more testing needed to be done. It took 9 years for us to finally figure out she has an immune deficiency.

We did have the Prometheus testing done which clearly indicated Crohn's. Our insurance wouldn't cover the test, and in the end it only let us know that she may develop Crohn's in the future. Most of her scopes (she's had 5) looked okay visually but the biopsies showed acute inflammation. Her last pill cam showed ulcers in her stomach and small intestine. The stomach ulcers were biopsied and were not indicative of Crohn's. Ulcers can appear for a number of reasons and do not always indicate IBD.

Being undiagnosed is extremely stressful and frustrating and I hope you get some solid answers really soon. If you have any questions about immune deficiencies I'll be glad to share what I know.

Is ok to post pill cam images ? I would like to hear forums thoughts / views?

Yes, it is fine to post pill cam images.

OK... I will post pics in a few mins. My son is on Entocort 9 mg in the morning. He's experiencing all the side effects....... cramps in legs, eating like a wild man, hot flashes, and reflux. Can any one offer help / advice how to minimize side effects? We're making him drink plenty of fluids plus eat bananas. Any other helpful pointers? Thank you!

This is a good article about the ulcers seen in Crohn's disease. I would certainly think the ulcerations can start small and then grow.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002561/

Thank you. I cant understand why three doctors at three top notch hospitals cant put a label on my sons illness. More importantly, why cant they treat him. Its been 5 months now.

My son's symptoms are worse at night when he lays down to sleep. He was up til 230am... crying about stomache pain / cramps.

My son has a big mouth sore on his inside lip today. Again.. more symptoms.

I also need to find a doctor who will prescribe pain meds. My boy is starting to loose it... feels helpless. We are getting desparate.

More doc appointments this coming week..... we'll see.

Thanks again.

To me it does sound like your dr is maybe treating your son for small bowel Crohn's. If the Entocort works in reducing the pain that may point forward it being Crohn's

http://www.webmd.com/drugs/drug-22007-entocort+ec+oral.aspx

In doc's pill cam report.... she stated rare ulcers in small bowel not suggestive of crohns. Yet shes treating with a med used for crohns. Entocort is not working.

You can ask for a referral to pain management. There are also IBS meds that might help - Levsin, Bentyl etc.
Your poor boy. I hope you get some answers soon!

Hugs we have been in your shoes more than once
First prior to crohn's dx.
That was ugly - then finding the right med combo .
Dealing with the pain was hard.
DS tried Levisin , bentyl , periactin , elavil etc...
Bentyl worked a bit.
Main things that helped until we found the right meds was
"Hot packs" the microwaveable kind .
A tens unit helped a lot for abdominal pain.
Mouth ulcers prescription rinse .
Warm bath soaking in the tub.
Swimming daily

Recently we found out about warm buddies
DS has arthritis as well so
We will be trying those soon.
http://www.warmbuddy.com/

Hope you can get into a Rheumo soon.
Bechets can mimic crohn's and cause lots of ulcers in the GI track /mouth

Thank you all. I mean it.

Entocort has not helped. Doc is switching to Pentasa 500 mgs for 4 weeks. My poor son.

So we have now tried two drugs commonly used to treat Crohns yet docs have not labeled his condition. Why not?

Has anyone used Pentasa?

Thx!!!!

We started with Pentasa. It helped some but eventually we added Prednisone and 6mp. Have you tried Flagyl? We're doing a round right now and it always helps my daughter (then again, she doesn't have Crohn's.....).

Pentasa as a monotherapy for crohn's is like taking an aspirin for a brain tumor .
Not going to help too much but not going to hurt either .
Pentasa can not reduce inflammation on its own period.
Prednisolone , Mtx and some biologics can .
Pentasa is like putting cream on the intestine.
DS took it for a month at dx while we waited for a second opinon .
It did nothing for him and he just got worse.
That said he took asacol HD as an adjunct therapy ( while on 6-mp then Mtx then remicade )
We thought it helped at the time but when we stopped nothing changed so ...
Good luck with the pentasa but realize if its not working in 30 days he may need something to actually stop the inflammation .

Thx. I am asking my second opinion doc at Boston children's hospital for his views.

My son has been rolled up in a ball for 5 months.... I'd rather he be admitted to hospital where he can receive pain meds along with treatment. I

Docs still aren't convinced he has crohns. Amazing.....

The new drug mix (Entocort and pentessa) is not working. Just bad side effects. We are getting desperate. Not sure where to turn next....

Pentasa won't work immediately. I believe it took several weeks before we noticed a change (and even then she wasn't completely well). I'd say you need more time before you know if it will work or not. In the meantime you could try some drugs used for IBS - Bentyl, Neurontin, Elavil, Levsin, etc. We've tried all 4 I mentioned with limited benefits, but every child is different.

Have you seen a Rheumo or Immunologist yet? I still think an immune work-up may be beneficial.

Yeah that ^^^
Entocort can take months ( weeks to work )
Pentasa - about 4 weeks you will know if it made any difference .
It did nothing for DS but maybe your lo will be different .

More mouth sores today on lips... visible on the outside. Heading to Boston children's hospital on 8/22 as my son's pains continue. Sad situation....

Make sure to ask about bechets
It mimics crohn's and cause really bad mouth ulcers .

HELP..... I went to two of the best GI hospitals in the world this past week. Neither doctor can definitely figure out what's going on with my son. Hypersensitive nerves in small bowels was one theory..... mild crohns / post infectious ibs another theory. We are taking him off Entercord (steroids) .. he started taking antidepressants - elavil - which wouldn't kick in for another 4 to 6 weeks. The pain is still off the charts. School starts next week. We have been in and of hospitals since March.... still no answers. My son is still in pain. It hurts when he coughs....sneezes....burps......even when in the car if we hit a bump. So is it ibs or ibd or post infectious ibs?? Is he on the right meds? Tomorrow his case is being presented to a panel of doctors at Boston s Children's hospital..... we'll see what the team of doctors has to say. Has anyone gone thru this diagnostic nightmare...? What more can I do for my boy?

I hope the panel is able to come up with something! I don't think there is much else you can do - you are doing such a great job trying to fight for your son. Pain management seems to be very important, the only thing different I have heard of is a partial epidural. I am not sure if they ever use them for kids. My cousin was offered one when she had really chronic back pain. They inject into the spine which provides pain relief around the back and tummy but still allows the person to walk. If they can't figure out what's wrong, they really need to put together a plan to treat the pain so that he can at least function on a daily basis.

Any news from Boston?

We tried Elavil for a short time. It helped with the diarrhea immediately but I'm not sure it ever helped with the pain. We eventually chose to stop the medication due to unwanted side effects. Our GI believes A has hypersensitive nerves in her bowels as well. I can't disagree with that theory, but none of the IBS medications have helped her. I hope you get better results.

Boston Children's has a really good pain management department. They also have a famous chronic pain rehabilitation program. We looked at it for my daughter and she may do it in the future if she is still in pain once the arthritis is controlled. They take kids with all sorts of diagnoses - abdominal migraines, complex regional pain syndrome, fibromyalgia, various kinds of arthritis etc. However, if it is Crohn's and not chronic pain from IBS, obviously that needs to be treated first.

http://www.childrenshospital.org/ce...r-program/pediatric-pain-rehabiliation-center